Tampere Center for Child Health Research, Tampere University and Department of Paediatrics, Tampere University Hospital, Tampere, Finland.
University of Helsinki and Helsinki University Hospital, Children's Hospital, and Pediatric Research Center, Helsinki, Finland.
United European Gastroenterol J. 2020 Mar;8(2):157-166. doi: 10.1177/2050640619900077. Epub 2020 Jan 9.
Follow-up of coeliac disease is recommended to prevent complications associated with unsuccessful treatment.
The objective of this article is to evaluate the implementation and significance of long-term follow-up.
Medical data were collected from 585 and follow-up questionnaires sent to 559 current adult coeliac disease patients diagnosed in childhood. Diagnostic features and adulthood health outcomes were compared between those with and without adulthood follow-up.
Of paediatric patients, 92% were followed up 6-24 months after diagnosis. A total of 235 adults responded to the questionnaires a median of 18 years after diagnosis, and 25% of them reported regular follow-up. They were diagnosed more recently than those without follow-up (median year 2001 vs 1995, = 0.001), being otherwise comparable at diagnosis. Those with follow-up were less often smokers (5% vs 16%, = 0.042) and relatives of coeliac patients (48% vs 66%, = 0.018), and more often students (48% vs 28%, = 0.005) and type 1 diabetics (19% vs 4%, = 0.001). Lack of follow-up was not associated with complications, ongoing symptoms, poorer general health or dietary adherence. All completely non-adherent patients were without follow-up.
Most coeliac disease patients diagnosed in childhood were not followed up according to recommendations in adulthood. The individual effect of this on long-term treatment outcomes varied markedly.
为了预防治疗不成功相关的并发症，建议对乳糜泻患者进行随访。
本文旨在评估长期随访的实施情况和意义。
从 585 名确诊为儿童期乳糜泻的成年患者中收集医疗数据，并向 559 名符合条件的患者发送了随访问卷。比较了有和无成年期随访的患者的诊断特征和成年后健康结局。
在儿童患者中，92%的患者在确诊后 6-24 个月进行了随访。共有 235 名成年人对问卷做出了回应，中位数时间为确诊后 18 年，其中 25%的人有定期随访。他们的诊断时间晚于无随访者（中位数时间为 2001 年比 1995 年，=0.001），但其他方面无差异。有随访的患者中，吸烟者比例较低（5%比 16%，=0.042），而乳糜泻患者亲属比例较低（48%比 66%，=0.018），学生比例较高（48%比 28%，=0.005），1 型糖尿病患者比例较高（19%比 4%，=0.001）。随访缺失与并发症、持续症状、较差的总体健康状况或饮食依从性无关。所有完全不依从的患者均未进行随访。
大多数在儿童期被诊断为乳糜泻的患者在成年期未按照建议进行随访。这种情况对长期治疗结果的个体影响差异显著。
